Evaluating quality of life in pediatric palliative care : a cross-sectional analysis of children's and parents' perspectives
Toro-Pérez, Daniel (Universitat Autònoma de Barcelona)
Limonero García, Joaquim T. (Joaquim Timoteo) (Universitat Autònoma de Barcelona)
Guillén, Montserrat (Universitat de Barcelona. Departament d'Econometria)
Bolancé, Catalina (Universitat de Barcelona. Departament d'Econometria)
Vilarrubí, S.N. (Catalan Society of Pediatrics)
Camprodon-Rosanas, Ester (Hospital Sant Joan de Déu (Barcelona, Catalunya))

Fecha:	2023
Resumen:	The patient's perspective is an essential component of understanding the individual experience of suffering in children with palliative needs, but it is a perspective that is often overlooked. The aim of this study was to compare the perception of quality of life (QoL) of children with life-limiting and life-threatening conditions expressed by the children themselves and their parents. Through a cross-sectional study, the responses of 44 parent-child dyads were obtained and the analysis was performed with the statistics based on Student's t distribution and non-parametric tests. Children value QoL more positively (mean = 6. 95, SD = 1. 85) than their parents (mean = 5. 39, SD = 2. 43). This difference exists even if we consider sociodemographic and disease variables. The presence of exacerbated symptoms is the situation in which both parents (mean = 3. 70; SD = 1. 95) and children (mean = 5. 60; SD = 1. 17) evaluate QoL more negatively. Conclusions: Children have a more optimistic view than their parents. When the child is the one who reports a lower QoL score than their parent, the child should be carefully monitored. The voice of the child and that of the family members can be collected to create a "family voice" and can be complementary. What is Known: • Children with life-limiting conditions experience multiple and changing symptoms that affect their QoL. • The child's perspective is often overlooked. What is New: • Children value QoL more positively than their parents do, even if we control for sociodemographic variables and the disease itself. • When the child is the one who reports a lower QoL score than their parent, the child should be carefully monitored.
Nota:	Altres ajuts: acords transformatius de la UAB
Derechos:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, fins i tot amb finalitats comercials, sempre i quan es reconegui l'autoria de l'obra original.
Lengua:	Anglès
Documento:	Article ; recerca ; Versió publicada
Materia:	Quality of life ; Pediatric palliative ; Children ; Parents ; Life-limiting conditions ; Psychological assessment
Publicado en:	European Journal of Pediatrics, 2023 , ISSN 1432-1076

DOI: 10.1007/s00431-023-05330-4
PMID: 38112799

10 p, 964.4 KB

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